Op 19 januari organiseerden wij (staf van Endometriose in Balans) samen met de Stichting run4endometriose een lunchbijeenkomst in Perscentrum Nieuwspoort om politici inzicht te geven in knelpunten van het beleid rondom endometriose en de impact die endometriose heeft op het leven van patiënten. Deze besloten bijeenkomst was bedoeld voor de huidige woordvoerders zorg (tweede kamerleden van de commissie) en hun beleidsmedewerkers.
Het is ons inziens cruciaal dat de awareness van endometriose wordt verhoogd. Niet alleen onder patiënten en zorgverleners, maar ook bij politici, beleidsmakers en zorgverzekeraars.
Na een welkomstwoord kreeg eerst Ellemieke Huijts-van Splunter (oprichtster van de Stichting WeRun4endometriose) het woord om de aanwezigen uit te leggen welke impact endometriose op haar leven heeft (gehad). Uit haar verhaal werd pijnlijk duidelijk waarom endometriose patiënten vaak lang eenzaam zijn bij het dragen van hun leed als gevolg van endometriose. Ellemieke werkt bij de politie, een echte mannenwereld met bijpassende cultuur. Dat maakte het voor haar aanvankelijk onmogelijk om eerlijk over haar klachten (met name tijdens haar menstruaties) te praten. Zij organiseerde haar werkschema geheel om haar menstruaties heen en nam zelfs vakantiedagen op tijdens haar menstruaties om er maar niet mee naar buiten te hoeven komen. Doordat zij pas heel laat werd gediagnostiseerd is zij kinderloos gebleven. Ter afsluiting toonde zij een kort filmpje, gemaakt door Libelle TV.
Vervolgens heeft Dina-Perla Portnaar – patiënte en één van de initiatiefnemers van het endometriose platform en indiener van de petitie op 24 februari – vertelt over de impact die endometriose had en nog steeds heeft op haar leven. Doordat zij nog jonger is, kwam uit haar verhaal heel duidelijk het verdriet en de onmacht naar voren over de negatieve invloed van endometriose op haar kinderwens. Ook bij Dina-Perla heeft de ziekte een enorme stempel gedrukt op haar professionele leven. Het onderstreepte het belang om de awareness over endometriose groter te maken, niet alleen bij de beleidsmakers van het Ministerie van Volksgezondheid, Welzijn en Sport (VWS), maar ook bij die van het Ministerie van Sociale Zaken en Werkgelegenheid (SZW).
Vervolgens nam collega Jacques Maas (gynaecoloog in het Maxima Medisch Centrum en voorzitter van de werkgroep endometriose van de NVOG) het woord. Als eerste toonde hij de uitkomsten van een enquête gehouden door de Endometriose Stichting onder hun achterban. Hieruit kwam duidelijk naar voren dat het nog steeds gemiddeld 11,9 jaar duurt in Nederland voordat een patiënte de juiste diagnose krijgt. Zij trokken een aantal conclusie’s naar aanleiding van deze enquête. Hiermee keken zij welke impact het heeft op het leven van patiënten met endometriose te weten:
- Minder zelfvertrouwen
- Voortijdig stoppen met een opleiding
- Parttime werken
- Seksualiteit
- Sociale leven
- Vertrouwen in dokters neemt af
- Frustratie
Vervolgens toonde Jacques de uitkomsten van een enquête gehouden onder Nederlandse gynaecologen waarbij de huidige endometriose zorg in Nederland en de opinie over centralisatie in beeld werden gebracht. De meerderheid van de respondenten is van mening dat de endometriose zorg gecentraliseerd zou moeten worden. Voorstanders van centralisatie noemen de complexiteit van de zorg, kwaliteitsverbetering en het bevorderen van samenwerking als beweegredenen. Inmiddels zijn de volledige uitkomsten gepubliceerd in het NTOG van februari.
Als laatste hebben wij zelf kort toegelicht wat de meerwaarde is van onze gecentraliseerde, holistische aanpak, waarbij de patiënten al in het eerste consult de regie krijgen en de diagnose met uitgebreidheid van hun ziekte goed in kaart wordt gebracht door middel van een non invasief traject. Nadat alle nieuwe patiënten zijn besproken in ons multidisciplinaire team van medici (gynaecologen, radiologen, darmchirurgen, urologen, fertiliteitsartsen en pijnartsen) en para-medici (psycholoog, bekkenbodemtherapeute en diëtiste) wordt tijdens een tweede consult de uitkomsten van dit overleg aan de patiënten voorgelegd. De patiënten worden door ons team gecoacht naar een voor hun best passende ‘tailor-made’ behandeling.
Onze conclusie aan het einde van de lunch was:
- Er is onder politici nog weinig bekend over endometriose an sich en de impact ervan op vrouwen en de impact op de samenleving;
- Het kamerlid Arno Rutte (VVD) benadrukte de rol die de beroepsgroep/zorgveld ook veel zelf kan/moet spelen t.a.v.: richtlijnontwikkeling, kennisopbouw zorgprofessionals (zodanig dat er snelle diagnose gesteld wordt) en voorlichting. Tegelijkertijd erkende hij ook dat dit niet alleen door het zorgveld gedaan kan worden;
- Er werd vastgesteld dat het laat stellen van de diagnose bijdraagt aan een lage QOL score (Quality of life). De concentratie van deze complexe zorg met een multidisciplinaire aanpak zal bijdragen aan het verhogen van de QOL score van deze patiënten. Daar moeten we in de zorg op blijven inzetten;
Arno Rutte deed een toezegging om n.a.v. deze lunchbijeenkomst namens de commissie VWS een kabinetsreactie te vragen (focus VWS & SZW) op de petitie.
RESULTAAT:
Wij zijn heel blij dat de samenwerking tussen Endometriose in Balans, Ellemieke en Dina-Perla heeft geleid tot positieve resultaten, zoals meer bekendheid bij politici en beleidsmakers en voor diverse aspecten rondom endometriose. Van significant belang is ook dat het Kamerlid Rutte op 8 februari j.l. tijdens de procedurevergadering van de Vaste Cie voor VWS steun heeft gevraagd – en tevens van de hele commissie heeft gekregen – om een kabinetsreactie (bij voorkeur van VWS & Sociale Zaken (SZW)) op de petitie, getiteld: Endometriose in Balans.
Het verzoek van Arno Rutte is als volgt:
Dit verzoek is tijdens de procedurevergadering op 8 februari door de leden van de commissie aangenomen. Dit verzoek is nu een commissieverzoek aan het kabinet. Nu moet het kabinet met reactie komen op de petitie.
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